Friday, May 16, 2014

Bad surprise

Reagan finally slept well last night! After a couple of nights with little to no sleep, I'm so glad she finally got some much needed rest. However, when she woke up this morning, she was not the happy smiley girl we were expecting! She was very serious, but stable. She refused to give us a smile, but she didn't seem to be annoyed or even sensitive to her brother's crazy antics. She had speech around 11 and tolerated sitting in her chair and making choices (which she did amazingly well using her hands...still have a huge hold up with the eyegaze device but we're getting another loaner next week). Then this afternoon while her brother was napping, she dozed off for a bit but then woke up hysterical! Talk about SHOCK! We really thought we were out of the woods as far as bad days go and that we were looking at smooth sailing this weekend (which would have been optimal since we don't have a nurse all weekend). But apparently what we thought was a super mild bad streak earlier in the week, was just some off days leading up to this! Which makes sense now that we think about it, because the last several bad streaks were preceded by a day where she seemed much more calm and relaxed (yesterday). Ugh. Talk about a surprise...a bad surprise! She cried off and on all afternoon. She dozed back off with the help of oxycodone, later woke up crying again but dozed off with clonidine. Tonight she was awake for a while and very tense, but not crying, but then dozed back off and woke crying once more! Lortab helped her to finally doze off tonight and she's been sleeping ever since. She's still in her tomato chair...not sure if we should attempt to move her or not! Poor thing. She's definitely been miserable. Hoping she'll sleep tonight and wake feeling much better tomorrow! Thank you for keeping her in your prayers!

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